Ethics & Public Policy Center

What Living Wills Won’t Do

IN THE AFTERMATH OF THE Terri Schiavo case, it seems clear that most Americans are uncomfortable at the prospect of politicians’ intervening in family decisions about life and death. This is not only understandable, but usually wise. Americans understand that eventually they will have to make medical decisions for loved ones, and that such decisions are wrenching. Most people have little faith that the state–or the courts–can make better judgments than they can. And they are usually right.

But it is precisely the complexity of these life-and-death decisions that sometimes makes state involvement inevitable. The state was involved in the Schiavo case long before Congress intervened, from the time Terri’s parents went to court in Florida to challenge her husband’s fitness as a guardian back in 1993. State judiciaries must decide when family members clash, or when doctors and families disagree, or when surrogates wish to override a loved one’s living will. And state legislatures have a responsibility to set the parameters for judicial decisions in particular cases. They must decide the admissibility of casual conversations in determining a person’s prior wishes, or the appropriate weight to give a person’s desires (such as requests for assisted suicide) even when they are clearly expressed.

For decades, we have deluded ourselves into believing that living wills would solve our caregiving problems; that healthy individuals could provide advance instructions for what to do if they became incompetent; that such a system would ensure that no one is mistreated and that everyone defines the meaning of life for himself until the very end. But it is now clear that living wills have failed, both practically and morally.

In the March-April 2004 issue of the Hastings Center Report, Angela Fagerlin and Carl E. Schneider survey the social science data, and their conclusions are damning: Most people do not have living wills, despite a very active campaign to promote them; those who do usually provide vague and conflicting instructions; people’s opinions often change from experience to experience; and people’s instructions are easily influenced by how a given scenario is described. These are not problems that any reform can fix. A person simply can’t grasp in the present every medical and moral nuance of his own future case.

The dream of perfect autonomy–everyone speaking for himself, never deciding for another–should fade each time we change a parent’s diaper, or visit a grandparent who does not recognize us, or sell an uncle’s property to pay for the nursing home. After all, the only fully autonomous death–with every detail governed by individual will–is suicide. And suicide is hardly a basis for dealing more responsibly with the burdens of caregiving.

As the baby boomers age, we are entering a period when long-term dementia will often be the prelude to death, and when caregivers will regularly have to make decisions about how or whether to treat intervening illnesses like infections, heart trouble, or cancer. When should we accept that death has arrived, and when does stopping treatment entail a judgment that Alzheimer’s patients are “better off dead”? What do we owe those who are cognitively disabled and totally dependent?

On these hard questions, the most vocal critics of Congress and “the religious right” in the Schiavo case have revealed the shallowness of their own thinking. Defending the “right to privacy” ignores the moral challenge of deciding howwe should act in private, as both patients and caregivers. Asserting that “the state should stay out” of these decisions ignores the fact that some hard cases will always end up in court; that legislatures have a civic responsibility to pass the laws that courts apply; and that a decent society should set some minimum moral boundaries, such as laws against euthanasia and assisted suicide. And claiming that we should “defer to medical experts” ignores the potential conflict between the ideology of living wills and the ethic of medicine, since some people will leave instructions that no principled physician could execute.

In the end, the retreat to moral libertarianism and liberal proceduralism is inadequate. We need, instead, a moral philosophy, a political philosophy, and a medical philosophy that clarify our roles as caregivers, citizens, and doctors attending to those who cannot speak for themselves.

ANY MORAL PHILOSOPHY of care should begin with the premise that disability–even profound disability–is not grounds for seeking someone’s death. But seeking death and accepting death when it arrives are very different matters. And while we should not seek death, neither should we see extending life at all costs as the supreme goal of care.

Imagine, for example, that a person with advanced Alzheimer’s is diagnosed with cancer, and there is a burdensome treatment (like radiation) that might extend the person’s remaining life from three months to six months. In this case, family members seem morally justified in rejecting the treatment, even knowing that an earlier death is the likely result. But they don’t reject treatment so that the patient will die; they reject it so that the patient will not suffer excessively as death arrives. They choose minimum discomfort, not death. By contrast, if the same Alzheimer’s patient gets an infection that is easily treated by antibiotics, it is hard to see any moral ground for withholding treatment. Holding back ordinary care is not the same as euthanasia, but it is still a choice that hastens death as its aim.

In reality, many dementia cases involve multiple illnesses, with uncertain prognoses, and a menu of treatment options. Often, there are various morally justifiable choices. Personal values do matter. But what is always needed is a moral framework that governs such private decisions, based on the belief that every life is equal, and no life should be treated as a burden to be relinquished, including one’s own.

Given the infinite complexity of these clinical situations, the scope of the law should always be limited. What is legally permissible is not always morally right, but what is morally wrong should not always be outlawed. Nevertheless, it is foolish to ignore the extent to which the current legal framework shapes how people make private decisions, or to ignore the proper role of the state in setting certain minimum boundaries. Legally, no competent person should ever be forced to accept medical treatment in the present that he does not want. Legally, no one should have the right to commit suicide or procure assistance in doing so, and no one should be killed or forced to die against his will or that of his guardians. And legally, guardians should not be forced to implement living wills that aim at death as their goal.

As for the courts that are called upon to settle certain cases, they will need some political guidance or governing principles to do so. For example, what if a tenured professor of bioethics, unable to bear the loss of his cognitive powers, leaves written instructions not to treat any infections if he ever suffers dementia? Decades later, now suffering from Alzheimer’s, the former professor is mentally impaired but seemingly happy. He can’t recognize his children, but he seems to enjoy the sunset. He’s been physically healthy for years, but then gets a urinary tract infection. All his family members believe he should be treated.

Should the state intervene to prohibit antibiotics–to protect the incompetent person’s “right to die”? Or should the state leave the family members alone, so they can do what they believe is in the best interests of the person the professor now is? If Andrew Sullivan and other critics are worried about “theocons” using the power of the state to undermine the right to self-determination, are they willing to use the power of the state to impose death when families choose life? Is this what their idea of “autonomy” really requires?

And this leads us, finally, to the ethics of medicine. We have already gone very far in turning medicine into a service industry and doctors into technicians who simply use their skills to do our bidding. The physicians who perform abortions when the life and health of the mother are not in danger, or the cosmetic surgeons who give breast implants to healthy women, or the doctors who prescribe growth hormone for kids of average height are not really practicing medicine; they are serving desires. Most doctors take their medical oath seriously, struggling daily and often heroically to provide for those entrusted to their care. But some have succumbed to various forms of utilitarianism, or simply believe that people with cognitive disabilities are already humanly dead. In cases like Terri Schiavo’s–a disabled woman, not dead or dying, whose feeding was keeping her alive without imposing additional burdens–it is hard to see how any doctor could ethically remove a feeding tube. And if we are to respect medicine as a moral profession, no court should compel doctors of conscience to do so.

As America ages and dementia becomes a common phenomenon, the dilemmas that the Schiavo case thrust onto the nightly news will only become more urgent and more profound. As a society, we will need to navigate between two dangers: The first is the euthanasia solution, and the prospect of treating the old and vulnerable as burdens to be ignored, abandoned, or put to sleep at our convenience. The second is that the costs of long-term care will suffocate every other civic and cultural good–like educating the young, promoting the arts and sciences, and preserving a strong defense.

We will face imperfect options, as societies always do. In navigating the dangers, we will need to rely on more than the gospel of autonomy, and we will need to confront the failure of living wills and the ideology they rest upon: that deciding for others is always to be avoided. In reality, deciding for others is what many of us will be required to do as parents age or spouses decline, and we will do well to accept this burden with moral sobriety rather than pretending it does not exist.

—Eric Cohen is editor of The New Atlantis and resident scholar at the Ethics and Public Policy Center.